Home / Blog / Research / Patient Registry / Breakthrough Summit Report: Turning Takeaways into Action Our Blog Raising Awareness, Our Impact, Advocacy, Patient Registry, I Am Empowered 11.12.25 Breakthrough Summit Report: Turning Takeaways into Action Washington DC, Oct 19-21, 2025: Our nation’s capital was the ideal setting for the annual NORD conference, themed From Voices to Breakthroughs! Big conferences are definitely outside my comfort zone, but showing up and representing you can build new relationships that lead to breakthroughs for us. So this was my second year attending and bringing MdDS into rare research conversations. The event kicked off with the IAMRARE® Patient Registry Leaders meeting, a day dedicated to sharing successes, discussing common challenges, and brainstorming new ideas. Executive and marketing directors shared strategic plans that are working for them, and I’m excited to implement what makes sense for the MdDS community. This spirit of collaboration and connection permeated the entire Breakthrough Summit. Of note, throughout three days of meetings and panel discussions, researchers, clinicians, and industry leaders emphasized the vital role of advanced technology and data-driven research. It is clearer than ever that patient registries are crucial tools for improving diagnosis, treatment, and accessibility of care. This short video explains how. If the video isn’t showing for you, please watch “What is a Registry” on YouTube. Now that you understand the powerful role patient registries play in rare disease research, let’s focus on what this means for Mal de Débarquement Syndrome patients. 🔬 From Data to Clinical Trials to Treatments The MdDS Patient Registry will allow patients to contribute the specific data that researchers, clinicians, and industry partners want. When it launches, it will join 72 registries on the IAMRARE platform. One is the Foundation for Prader-Willi Syndrome (PWS). PWS is a genetic disorder with an estimated incidence rate as low as 1 in 25,000 live births. That is very rare. Yet their global registry data is robust enough to support clinical trials. Their community is committed to participating in the pursuit for a better outcome. Other registries have successfully developed treatments based on their longitudinally patient-provided data! By one estimate, MdDS occurs in 1 in 2,000 persons. With MdDS-specific patient data and the same commitment, we can aspire to be just as successful. The spirit of connection and collaboration among these Patient Registry Leaders is powerful. Just before taking this group photo, Angela Paradis, ScD, a Senior Medical Director at Biogen, gave us some words of encouragement, reaffirming that our voices can lead to breakthroughs. The more vocal you are, the more we see you. From Takeaways to a Giveaway! A herd of zebras! Two lucky readers who comment on this post with the standard definitions for the symptoms of MdDS will receive one of these zebras. In medicine, doctors are taught to look for common causes and diagnoses (“horses”) not a zebra, the unexpected or rare. Yet 1-in-10 is the US has a rare condition! The zebra is a powerful symbol for our communities and the need for greater diagnostic attention. I brought home a small herd of zebra stress balls that were conference goodies, and I’d love for you to have one. Here’s how to win one! All you have to do is understand the defining symptoms of MdDS — the perceived sense of movement. Two lucky readers who comment below with the standard definitions for the four distinct perceived movements will receive one of the zebras pictured. Standard definitions accepted only, no ad libbing. Giveaway closes November 30, 2025 at 11:59:59PM ET. Due to the high cost of postage, we can mail to US addresses only. Good Luck! Let us know if you have any questions about the summit, the MdDS Registry, or the zebras. We’d love to hear from you! Sincerely,Holly Balog, Board DirectorFlight-triggered, Dx’d 2007 📢 From Voices to Breakthroughs – Your Voice Matters! I encourage you to step outside your comfort zone, too. Because this work requires a collective effort, and the MdDS Foundation needs your help. Help turn this year’s conference takeaways into action by joining as a volunteer. Maybe you’re technology-driven and can help with IT or website development. How about writing or communications? And, of course, there’s always fundraising. We are working on so many projects for you, we’d really benefit from a Project Manager to keep us on track for success. Ultimately, your voice matters. Contact us describing your skills and ideas, and we’ll discuss how you can make a direct impact. Related posts: Scholarship Announcement & Commitment to Cures June 2024 Newsletter
Sway Shaken like a rug Inability to hold still Nausea Visual disturbance Wind increases symptoms and don’t know why. Reply
✅ 1 ❌ 5: Please visit the Symptoms page of this website! It’s important that we separate symptoms (the perception of movement, specifically rocking, bobbing, swaying, and/or gravitational pull) from their impacts, like feeling shaken like a rug. This is especially true when talking to a healthcare provider or researcher, so they can focus on what really matters. That’s a great observation you made about the wind. Even when we don’t understand why, it’s good to recognize things that modify our symptoms so we may be able to better manage them. Reply
MdDS has the following perception of movement : Swaying—-perceived as side to side movement Bobbing—-perceived as up and down Rocking—-perceived as front to back Gravitational Pull—-perceived as pulling in a certain direction After over 15 years of living with MdDS, I know three out of four of these symptoms very well. I have tried to educate my local GP, especially by providing her with very specific symptoms to help with diagnosis. Thank you so much for your work in research and education. Reply
✅✅✅✅ Thank you for helping to educate others, especially healthcare providers. It’s nice to know you’ve got our backs like we’ve got yours. Reply
MdDS in a nutshell… Swaying, Bobbing, Rocking and Pulling Sensation That is the short version 🙂 For all that are suffering this horrible syndrome, please hang in there. December will be 11 years for me. PLEASE KNOW YOU ARE NOT ALONE. There are people out there that UNDERSTAND what you are experiencing every waking moment. Who do we have, if not each other. Take good care! And thank you Holly for being a strong voice for the ones whose voices seem to be nothing more than a whisper anymore. (2014 15 Hour Car Ride from Florida to Virginia for Christmas. Diagnosed 2016) Reply
💚💚💚💚 Sometimes the short version is the best, especially when it comes to keeping someone’s attention. Thank you, Seleena, for emphasizing that there are people who DO understand. Our online support group, MdDS Friends, has members from around the world. They’re all incredibly supportive and offer actionable tips and advice. The Support page of this website has information on how to join. Reply
For 2 weeks I have been trying to join the Facebook MdDS Friends group and all I get is a message to say my request is pending but I never hear anything. It also asks me to answer an additional 3 questions for the admin people which I initially answered. It has become quite frustrating. I was diagnosed after a 5 week cruise in April 2025, now 10 months into the syndrome with constant movement every day. Reply
Thank you for bringing this to our attention. It looks like you need a profile photo for your Facebook account. Facebook often denies accounts without a profile photo, to help ensure group quality. Aside from that, it is best to use Facebook.com not their app. Apps are often unreliable. We’ll be on the lookout for your modified request to join. Reply
The four symptoms of MdDS are: Persistent perception of movement such as: 1. Rocking (front to back) 2. Bobbing (up and down) 3. Swaying (side to side) 4. Gravitational pull (pulling sensation in a specific direction) It’s not fun. Kelly Waterbury Reply
1. Rocking back and forth 2. gravitational pull, it could be from any direction, my pull is to the right 3. swaying side to side 4. bobbing up and down. Note: sometimes I can just be walking and all of a sudden everything seems to start bobbing, like I’m going to fall. Also walking unsteady happens too just as if you’re in bad waves and cannot stand up. Reply
✅✅✅✅ Thanks for your note, Susan. The MdDS Patient Registry is being built to capture individual experiences like yours. While we don’t currently know the importance of the direction of movement, this nuanced data could become meaningful data in future analysis. Reply
Congratulations, Susan! You’ve been randomly selected from the commenters who properly responded that the core symptoms of MdDS are, in no particular order, Bobbing (up and down), Rocking (front to back), Swaying (side to side), and Gravitational pull (pulling sensation in a specific direction). We’ll be in touch with you by email so a volunteer can get your zebra mailed to you. Thanks for participating in the giveaway! Reply
Thank you, I will keep him proudly and show him off as much as I can. Especially my Doctor she will be so proud. Reply
Awesome report from the conference, Holly! Thanks for being the face of MdDS at this annual meeting focused on rare disorders!! You have clearly captured the importance and potential value of patient-derived data envisioned for the up-coming MdDS Patient Registry. Thank you and your volunteered support for the MdDS Foundation. Together, we CAN make a difference for the community with MdDS!!! Reply
What was the “Breakthrough”? I wouldn’t want a zebra—the zigzagging lines would only worsen my condition and make me feel even more uncomfortable. Reply
Your response is very valid, and we hear you. Intolerance of busy patterns is experienced by some, like yourself, but not all who suffer with MdDS. Overall, this zebra has been very well-received by the MdDS Community. In fact, quite a few have asked if they could purchase one. (No, it is not for sale.) The MdDS Foundation is as interested in learning about associated symptoms as it is about the core symptom of perceived movement. When the MdDS Patient Registry launches – it is currently in construction – it will collect patient-provided data on symptom modifiers. Modifiers are things that increase or decrease symptoms, which could include busy patterns. The MdDS Registry is designed to give us a better understanding of MdDS and, hopefully, our very own “Breakthrough” that leads to better quality of Life and outcomes for the MdDS community. To learn more about this important initiative, please visit the MdDS Patient Registry page of this website. Reply
How will the register work? It is global or only US-based and what will be required to become part of it? Reply
Global! The study will conducted online. It will be open to anyone who meets a short list of inclusion criteria. If you’ve experienced symptoms of MdDS for at least 30 days that is relieved when in passive motion, you will be able to enroll when the registry launches. An official diagnosis is not required. Minors (less than 18 years old) may have a Legally Authorized Representative (LAR) complete surveys and questionnaires on their behalf. There will be no cost to join this study. Answers to other Frequently Asked Questions can be found on the MdDS Patient Registry page of this website. Reply
The four distinct perceived movements are 1. Real motion 2. Illusory motion 3. Induced motion 4. Motion aftereffects Reply
Your unique perspective is appreciated, Laura. However, your answers are incorrect. please visit the Symptoms page of this website. When talking about MdDS, it is important to use clear and consistent language. We’ve already created standards for measuring symptom severity with our new, printable scale. Now we are doing the same with MdDS Symptoms. Please visit the Symptoms page of this website. Being familiar with the current language empowers those with MdDS to be understood by clinicians, researchers, and anyone who is unfamiliar with the disorder. Reply
